On Jul 24 2019 I was FLOXED!
If you are lucky, you have not been Floxed. I was not lucky. In this blog I relate my horrible experience with being floxed and how recent exosome treatments have completely turned my life around! This blog also contains some general information on Floxing.
I had some corrective surgery about July 19, 2019 and because of a minor infection my doctor prescribed the antibiotic, ciprofloxacin. She did not mention anything about possible side effects or risks of taking it. I duly went to the pharmacy and received my prescription.
The pharmacist pointed out to me that there was a “black box” warning for this medication and gave me four 8.5 x 11 sheets of paper with information and warnings.
( A black box warning is the FDA’s most stringent warning for drugs and medical devices on the market. Black box warnings, or boxed warnings, alert the public and health care providers to serious side effects, such as injury or death. The FDA requires drug companies to add a warning label to medications that have a black box warning. )
The warning indicated that “Taking ciprofloxacin increases the risk that you will develop tendinitis (swelling of a fibrous tissue that connects a bone to a muscle) or have a tendon rupture (tearing of a fibrous tissue that connects a bone to a muscle) during your treatment or for up to several months afterward. . . . the risk is highest in people over 60 years of age.” Read the full warning here.
Having read the warning, I carefully monitored the impact of the drug particularly watching for any signs of tendinitis. For four days there was no noticeable adverse effect and the infection, which had been quite minor, disappeared. On the fifth day cipro hit! With a bang! I was almost paralyzed. I could not easily walk. To go upstairs I had to crawl. The pain was intense, particularly at the top of both legs, but also in my arms. Within minutes of me noticing the first pain the pain level went from 1-10 throughout all the tendons in my arms and legs. I stopped taking cipro immediately.
While it eased a bit, and my mobility improved, this pain was with me continually. I also realized that I had suffered quite a hit to my brain. My memory was poor and I was experiencing ‘brain fog’. I was 73 at the time, very healthy and physically active, doing level 2 Ashtanga yoga 6 days a week. From the attack on the fifth day for the next 13 months I suffered from severe pain in my tendons. I could not do my yoga practice — I tried to do part of series 1 three days a week but could not do that repeatedly. Problems with my brain continued severely limiting my ability to function beyond minimal tasks and making work impossible (I am a mathematician and IT consultant)
Fluoroquinolones are a class of antibiotics approved to treat or prevent certain bacterial infections. The fluoroquinolone antibiotics include ciprofloxacin (Cipro), gemifloxacin (Factive), levofloxacin (Levaquin), moxifloxacin (Avelox), and ofloxacin (Floxin). They are known to lay people as floxacins and if you have a bad reaction to them you have been “floxed”.
Much has been written on the internet by and about the suffering that has been caused by these drugs, and how they work to cause such damage. Here is just a sampling of the information available (warning: if you have been floxed this is terribly depressing reading):
- Fluoroquinolones are some of the world’s most commonly prescribed antibiotics. In the United States in 2015, doctors doled out 32 million prescriptions for the drugs, making them the country’s fourth-most popular class of antibiotic. But for a small percentage of people, fluoroquinolones have developed a bad reputation. On websites and Facebook groups with names such as Floxie Hope and My Quin Story, thousands of people who have fallen ill after fluoroquinolone treatment gather to share experiences. Many of them describe a devastating and progressive condition, encompassing symptoms ranging from psychiatric and sensory disturbances to problems with muscles, tendons and nerves that continue after people have stopped taking the drugs. Link to original article
- “Cipro and other fluoroquinolone antibiotics are antagonists to GABA(a) receptors meaning they bind to GABA(a) receptors and block GABA from being able to bind to the receptors, resulting in stimulation to the central nervous system. Many people report a wide array of neurological and psychological symptoms even after discontinuing the use of Cipro that suggests possible long-term damage to Gaba receptors that is not easily reversed.” Link to original article
- Fluoroquinolone (FQ) Associated Disability (FQAD): In 2016 the term FQAD was coined to describe the long term symptoms observed in some patients after taking FQs. t is uncertain, but suspicious, that FQs can bind to cellular components and linger in the body for years. This may be part of the ongoing symptoms associated with FQAD. It’s hard to say if “detoxing” FQs from the body is a relevant issue as it’s not certain they are still present shortly after stopping the drug. But, for certain, the lingering symptoms are due to the damage to the body which is difficult to repair. Link to original article
A Google search will generate many, many more such articles, support groups and (mostly holistic) medical practitioners offering information and advice on the subject. Little of the information available offers hope for cure or relief which is why I am writing this blog. Although not cured, I have made significant progress towards recovery
Recovering with Exosomes
The major breakthrough for me in recovery occurred in August of 2020, approximately 13 months after my cipro ‘hit’. That was when I first received some exosomes through an IV ‘push’ (injection). So what are these exosomes?
The definition of exosomes is evolving as an understanding of what they are comprised of and what they do expands. In general they are very small membrane bound particles, between 50 and 120 nanometers in size [note: a nanometer is a millioneth of a meter], that are exuded from cells, into the intracellular spaces (including lymph and blood) and absorbed from such spaces. They can have many functions in the body including:
- providing a means of intercellular communication and of transmission of macromolecules between cells
- spreading of proteins, lipids, mRNA, miRNA and DNA and as contributing factors in the development of several diseases
- are being proposed to be useful vectors for drugs because they are composed of cell membranes, rather than synthetic polymers, and as such are better tolerated by the host
- are becoming more broadly accepted as the leading therapy in regenerative medicine beyond stem cell therapy as they signal to the body to remove inflammation and begin cell regeneration
This is clearly a very complex field and much research is being done to try to understand it.
So what am I doing at this forefront of technology and what exosomes am I using?
During the past few years much work has been done on stem cells and in particular the use of stem cells from placenta (such cells being very young or pure) to treat various conditions. Some of the practitioners in stem cell research moved beyond placenta tissues to consider the amniotic fluid in which a fertilized egg matures into a full term healthy baby. This fluid, which contains many different kinds of exosomes, clearly contains an interesting and powerful mix of them. Moreover it is known that this amniotic fluid not only nurtures the developing fetus but also nurtures the mother during the pregnancy. So the reasoning was that this amniotic fluid could be used as a source of exosomes that would be beneficial to an adult.
There are many suppliers of these exosomes derived from amniotic fluid. The considerations on choosing a supplier are complex and beyond what I can write about here. This is a link to a 20 minute video by one of the developers of an amniotic based exosome (for which he has trade marked the name “amniosomes”), Dr. Bruce Werber, which will answer some of the questions that you might have. The following link provides additional information on exosomes: https://www.qcmedicine.com/regenerative-medicine
My Treatments and Results
The First Round of Treatments
As mentioned earlier, I had my first treatment with amniotic exosomes, the amniosomes from Thrivell on 11 August 2020. That day we had driven to Boca Raton from Dunedin where we live. The drive which takes about 6 hours, with stops, was hard on me. The tendons were sore and sitting for such a long time was painful. We arrived in Boca about two and rested for a couple of hours at the hotel.
At 4 we went to the Brazelia Integrative Anti-Aging Center where Dr. Brazelia Lazarri gave me an injection of 2 c.c.’s into a vein in my left arm — an ‘IV Push’. David Konn of QC Medicine and Dr. Jeanine Livermore, who had arranged for the treatment, were there and we stopped afterwards to have coffee with them. I only lasted about 30 minutes– I was fatigued. We went back to the hotel, rested for an hour or so and then went to dinner. It was a short meal and I went almost immediately to bed, exhausted by the trip and the treatment.
The next morning we returned to Dr. Brazelia where my husband had a 1 c.c. IV push injection after which we drove home, about 5 1/2 hours. On this trip I was quite fatigued and on the way we stopped for about 45 minutes and I slept. Unlike my reaction, my husband was bursting with energy within just a couple of hours of the injection and when we got home he, instead of being tired by doing all the driving, prepared an evening meal for us!
Although, initially tired by the treatment, gradually over the next two weeks or so my body started to recover and the pain that had been plaguing me since the cipro poisoning gradually waned so that I would often be pain free for several hours. What a welcome relief! I wanted more!
We returned to Boca to Dr. Brazelia where I had another 1 c.c. IV push injection on 1 September. This time we stayed in Boca for two nights. I was up to a little sight seeing and enjoying the chance of a mini-vacation during the pandemic. David Konn, who again arranged for the amniosomes from Thrivell, commented a couple of days later that when he saw me I “looked so different [he] was a little shocked and happy.” On the trip back, instead of hurting and being tired I even drove half the distance — the most driving I had done since the cipro poisoning!
Gradually over the following weeks there was continued decrease of the muscle pain and I was able to resume a little yoga. My brain fog alleviated a bit and my memory sometimes worked. However during this period a discussion in the evening of the next day’s plans would be forgotten and have to be repeated.
One of the joints on my left index finger is quite swollen, perhaps an arthritic condition caused by an injury long forgotten. Prior to these treatments I could not bend this finger. While the finger remained swollen the amount of swelling decreased and I could now bend the finger slightly.
The Second Round of Treatments
With the continued improvements I wanted to have more treatments. David Konn had suggested that the full impact of the treatments can take a few months to appear and, with other activities and commitments it was not until 12 January 2021 that we were able to schedule further treatments. This time the amniotic exosomes (known as CRM Matrix) came from CRM Labs owned by A. Farshchian MD, who has been working with stem cells for over 20 years, and more recently with amniotic exosomes. The change was suggested because the Amnio Matrix had a much higher content of Exosome per cc, almost 10 times as much. Again the arrangements were made by David Konn and the treatment was given by Dr. Brazelia.
This time I received 2 c.c.’s. One c.c. was a an IV push. For the other c.c., Dr. Brazelia divided the dose into three injections which were placed around my right shoulder to try to further alleviate pain in that area. Because of the high concentration of exosomes multiple injections were feasible.
Gradually there is reduced disability in my tendons and I can perform more of my yoga practice, although I am still only able to do it three days a week (but now I can usually make all three practices I target!)
The big breakthrough, however, has been with my brain. The brain fog is lifting and I can think and do the kind of work I used to do with computers, accounting, etc. A particular instance occurred about 3 weeks to a month after this second treatment. I had four things I wanted to tell my husband. Usually I had needed to write something like this down to convey such information, but this day I went to him and said “I have four things to tell you”. And I remembered three of those items! He was very pleasantly stunned. My brain is coming back — such a relief.
I am not out of the woods. I still get pains in my tendons if I over exert or if I am overly tired. I am not able to participate in vigorous athletic activities (something that I enjoyed before being floxed). My brain, though much better, is not where it was. I have days that are ‘up’ and days that are ‘down’. But I now have ‘up’ days and I have lots of them and I am usually happier, looking forward and doing things. This is such a change from before my first treatment last August.
The plan at present is to continue having exosome treatments about every three months and I hope for continued recovery.
What works for me might not work for others who have been floxed. So far there do not appear to be any downside risks for me. The treatments are not inexpensive and they are not covered by my medical insurance. But they, to me, are worth more than gold and I shall keep taking them for as long as I continue to see improvement.